Just call her aqua-lung

Well, this girl is just continuing to flow. She is back to where she started with the drainage and it doesn't seem to be abating. We are on day 28 today. The doctor said "She's not even close to going home." So we continue to wait. She is tolerating the albumin infusions twice daily, and will probably be done with them after today. I haven't gotten the results of her blood work yet. Her x-rays are wonderful, showing nicely inflated lungs and no residual fluid. The chest tube is working well, obviously, and she's not in any more pain except when someone comes to flush the tube. She's not taking anything for pain now, though. Not even Tylenol.

Katie Mei is starting to talk a bit more, with some not-so-well pronounced words for going to bed "nigh-nigh", cold "toad", hot "hassa", "gentle", "hello", more "mo", and lots of grunting and pointing. We're getting there. She still babbles a lot and some of it sounds Chinese. But when I ask simple questions in Chinese like "What do you want to eat?" or "what is your name?" she does not respond. My pronunciation isn't perfect, but it's no worse than hers. She is just in that period of language confusion as she trasitions to English. Merrilee did it too, and refused to even listen to spoken Chinese when she came home.

Yesterday evening Katie Mei and I were looking at photos of our family when she took a picture from me, pressed it to her lips to kiss it, and then hugged it to her neck. It was a take-my-breath-away moment. I am so thankful for that little touch. She misses her family, which means she knows she has a family. I am so in love with this child, and these little things just make my heart fill with joy. I can't wait to get her back home.

Thank you all for your comments, prayers, and encouragement. It means so much to me to have your comments pop up on my cell phone (which gets email) through out the day. Even if I don't respond, my heart is warmed by them and I am thankful.

So we continue on into our second month now, and will be here over Easter. I'm disappointed, but we'll get through it.

Love,
Petrie

Things might be looking up

This weekend the drainage started to taper off and today's x-ray showed that it is indeed less fluid in the lungs and not a clogged tube! She is doing well and her oxygen levels are in the mid to upper 80s. This is all very good news.

On the down side, she's back on the IV because her albumin (protein) levels are low. I was so disappointed this morning when the news came. But the doctor wants to try to bring the levels up. She also said albumin helps regulate fluid in the veins, so this might help with the fluid output as well.

So this is where we are today.

Please pray for the albumin levels to come up, the drainage to stay low (IV fluid will increase her fluids levels, so she's got to have a diretic immediately after each IV session), and that none of her other blood chemistry gets out of whack. My heart's desire is to have her home for Easter next weekend, so I'm adding that to the prayer requests as well.

Merrilee and Jacob are doing well at Grandma and Grandpa's house. I'm so glad to know they'll be able to hang out there as long as needed and that they'll be able to enjoy warmer weather than they would have at home.

Thank you for keeping us in prayer and thinking of us.

Love,
Petrie

Blessings,
Petrie

Week Four

As of yesterday, we are going on four weeks. I had really hoped we'd not go past three, but that's no longer an option. We had setbacks this week that will probably keep us here for at least another additional week. Katie Mei's drainage tube sutures slipped out. pulling out the tube, and she got air in her lungs which partially collapsed her right lung on Wednesday. She had to be taken in for a surgical procedure to put in another drainage tube under her right arm, and this new tube is very painful. So she's back on oxycodone and is not feeling very happy. She is alert and active, but in pain much of the time. This has caused her to breathe poorly (gasping breaths called splinting) and now her oxygen levels are low. We had folks in our room all night last night being fretful over this. They even called in the x-ray and cardiothorax surgical team members to check her out at 3 and 4 am. It was yet another night of no sleep.

Home life is also complicated now. Our cat is dying and Jay had to come home to take her to be euthanized. Then he's going to take M &J down to my parents' house for the rest of our hospital stay. It has just gotten too difficult to try to organize child care and other activities while I'm here. I cannot do it any longer and though many people have been so helpful in watching them, it still costs me much time and energy to organize it, and I just don't have the expendable energy any longer.

Katie Mei is not doing any better as far as the lung fluid is concerned. She is still producing a lot and there is no end in sight at this point. So we wait.

Love,
Petrie

No improvement

Hi,
I'm just going to give you the short update that things have not changed. Katie Mei still has a lot of fluid on her lungs and cannot go home. She's doing all right otherwise. She wants to walk around and hang out in the playroom when it's open. But otherwise she's just bored and not having any fun.

I'm not having fun, either, so I"m going to take a break from blogging for awhile. It's been 18 days, and I feel like there isn't anything else to say. I will let you know if there's good news, though.

Thank you for keeping us in your thoughts and prayers.

Love,
Petrie

And another week is past

Today is the start of week three. Katie Mei is doing so well as far as her attitude, spirit, and physical stamina are concerned. She loves to get out of the room and walk the halls, play in the toy room, push a little shopping car around and pull a doggie on a string. I wish I could do a better job of entertaining her, but she is just lonely for Jacob and Merrilee. Today while we were in the playroom there were two five-year-old girls doing a craft project and she just stood there and stared at them longingly. I know she wants to interact with other children so much, but in this cardiac care unit, the best policy is isolation. So we don't play with other kids and we continually smear her hands with antibacterial gel. She sucks her thumb, so I'm always reminding the nurses to swab down their stethoscopes or whatever they've let her play with. The little kids in this unit are at such risk for a mild infection becoming life threatening, and it isn't worth it to let the kids interact much.

Katie Mei's electrolytes have improved greatly since I got the potassium supplement off the menu. She was vomiting too much and I didn't feel it was worth using. So she's back to eating and her potassium is in a very good range now. She is also taking a drug that helps keep potassium in her body since she's also still on the diuretics for the excess fluid in her lungs.

So the lung fluid is still our biggest battle. I would love to never say we're going on week four, so please pray to that end. Pray for her lymphatic system to adjust to the new pressure in her venous system so less fluid would drain into her lung cavity. And pray for her oxygen level to go up as well. It's all related, and less fluid will mean more oxygen.

Tomorrow Jay is bringing the kids up and I pray we will have a wonderful time, that Katie Mei will be encouraged and the kids will get a burst of renewed joy from the visit. Jay and I are also looking forward to spending more than a couple minutes in passing as well. I am so thankful the hospital changed it's policy on child visitors this week. What a blessing!

Love,
Petrie

Trying to stay joyful

We're tired of this, but we keep waiting. Katie Mei still has considerable fluid in the lung cavity, so it looks like another week here. She's doing well and is waddling all over the place. She likes to take her doll for walks and stroll past other people's rooms to see what she can see. She's got a pretty good attitude as long as she has a nap.

Yesterday was her 2nd birthday and the hospital staff gave her a doll and a teddy bear, as well as a Carvel ice cream cake. She's not supposed to have anything with fat in it, but they made an exception for a piece of cake.

I'm tending more toward feeling down in the dumps, and a lot of it has to do with the kids back home missing me and the fact that I haven't spent any time with Jay in over two weeks. We've passed twice as we do our switch-off here at the hospital, and most of that is information exchange.

Please pray for me to maintain a Godly, joyful attitude here. I pray hard when I feel it slipping, and God faithfully bolsters me and reminds me of his truths.

Love,
Petrie

A Better Morning

Katie Mei is eating this morning and is in a much better mood. Thank you all for keeping her in prayer. She has been playing games, coloring and just being a happier toddler today. I even got some laughs out of her.

She is off her oxygen now, as long as her sats stay at least above 88. We took a walk around the floor and got to enjoy the morning sunshine. It was wonderful to be free of wires and tubes. She is still wearing the heart monitor, but that is transmitted to the nurses desk and doesn't require the whole set-up.

No more vomiting this morning, and she's off the IV drop for now. Hopefully her belly will continue to feel well and she'll eat more after her nap.

This is a short post, but my brain is about fried and I just wanted to give you a quick update on her progress.

Love,

Petrie